IDF Advocacy Day 2018
On March 22, 2018, 49 advocates from the primary immunodeficiency disease (PI) community took to Capitol Hill to advocate for issues important to individuals with PI. IDF is grateful to have such passionate advocates whose motivation was not diminished by the snowstorm that unfortunately prevented some participants from being able to attend IDF 2018 Advocacy Day in Washington, DC.
Participants made the most of their time in the nation’s capital, conducting meetings with 81 Congressional offices. In addition to requesting legislative support, advocates thanked Congress for passing two pieces of legislation vital to the PI community. One such piece of legislation extended the Medicare IVIG Access Demonstration, which will allow individuals with PI who are in the demonstration project to continue to have their in-home infusions covered through 2020 while IDF continues advocating for this to become a permanent benefit. The other legislation accelerated the start of the Medicare SCIG home infusion benefit, ensuring that Medicare beneficiaries with PI have continued access to SCIG until the permanent benefit takes effect in January 2021.
In addition to thanking Congress for their support and legislative action last year, participants made new requests. First, advocates requested Representatives to support HR 3976, the Access to Marketplace Insurance Act, which removes the barrier to care resulting from a federal policy issued by the Centers for Medicare and Medicaid Services (CMS) that allows insurers operating under the Affordable Care Act (ACA) to deny coverage to patients with conditions like PI, if they receive financial support from charities to cover their out-of-pocket medical costs. HR 3976 will require that Marketplace insurers, and Medicare and Medicaid programs allow third party, charitable organizations to pay medical costs on behalf of an individual participating in such plan. Second, advocates encouraged lawmakers to support IDF and the Coalition for Accessible Treatments’ (CAT) plan to introduce legislation to address the issue of high coinsurance, to ensure patients have options for flat-fee only plans so that people can afford the treatment they need to stay healthy. Lastly, advocates urged Congress to ensure that any healthcare reform proposals maintain patient protections currently in place including: (1) assured coverage for those with pre-existing conditions; (2) prohibitions on annual and lifetime caps; and (3) limits on annual out-of-pocket costs.
IDF would like to thank all its wonderful advocates for another successful Advocacy Day on Capitol Hill! If you’re interested in advocacy but weren’t able to join us in Washington, D.C. this year, consider applying to be a Health Access Advocate and work with legislators in your home state to effect change on the local level!
This article originally appeared in the IDF monthly e-newsletter, Primary Immune Tribune. Click here to subscribe.